Tag Archives: anxiety

Further Adventures in Bureaucratic Incompetence.

10 Tuesday Apr 2018

Posted by in Blog, Disability, Housing, Mental Health

≈ 1 Comment

Tags

, , , , , , ,

Will I ever share good news to do with housing? Well, one day I hope to but today is not that day. When you’re dealing with a department as shambolic, uncommunicative and Kafkaesque as the council’s housing department, you have to cross your fingers and pray that all other agencies involved are on the ball. That appears not to have happened.

This afternoon I spent 40 minutes in an airless back office that smelt of feet, waiting for the results of the Great Bureaucratic Incompetence-Off. I knew that the council had sent a form (plus a freepost envelope!) to my GP back in October – I knew this because it had been put into the system shortly before I had an appointment in November, and the GP I saw had told me her colleague would be doing it soon. I also knew that it was now five and a half months later, and I had seen zero progress as far as housing went – but also that sometimes the council needed something akin to 20,000 volts up the arse to do anything with the information they themselves had requested. However, an afternoon at the housing office is only slightly more preferable to one spent having a filling without anaesthetic, and I assumed that finding anything out from the GP’s office would be somewhat easier than dealing with staff at the housing office (you know those characters in videogames who have important things to say to you but you can’t ever work out the right thing to make them say it?). I guess in retrospect 40 minutes in an eau-de-pied office surrounded by broken blood pressure machines was better than [time doesn’t actually exist in a housing office] the alternative.

“There’s a queue, dear”, said the receptionist, when I asked her to look up the letter on the system, and see if anyone had “actioned” it (arrgh, not a verb, I refuse to accept it).
I was aware there was a queue, I had waited in it for 10 minutes, and now I was at the front of it. “Can’t you come back another time?” Mindful of the ‘aggression will not be tolerated’ rules laid out on laminated pages on the counter, I aimed for ‘snippy but polite’ and pointed out that there was always a queue and by the standards of queues I’d been in there, this was quite a mild one. Five minutes later I found myself guided to the back office by the reception manager, and left for 20 minutes or so while she tried to find out some more information. She returned holding the sheaf of printouts that the first receptionist had handed to me 20 minutes ago. No, nothing had been done with the forms since they arrived in October. For over five months I sat at home like a lemon (again!) assuming someone was doing something with the information I had given them (again!) but instead the Thing That Needed Actioning (argh!) was sitting in a to-do pile in another dimension (again!)*. She left again for a while, and came back to offer me an appointment to fill the form out tomorrow morning with, awkwardly, the same GP who told me that her colleague would be doing the form five months ago.

(*) If this sounds depressingly familiar, it’s because it is. From January til June 2017 my housing application for impending homelessness sat in an unattended inbox until my friend (who is a housing support worker, but not for my council) badgered them into finding it and starting the process. So that makes a grand total of 11 and a half months of unnecessary delay out of the 15 months since I submitted my application to the council. Should I have sat around for both delays, waiting for them to get this far without chasing anyone up? Of course not! – and that’s where the paralysing anxiety comes in, and the depression that makes me too miserable to even think about housing, and the fatigue that prevents me from being in any way useful most of my waking hours. Basically, all the things that will go on that medical form tomorrow. It took until today for me to feel okay enough to ask about the letter; it’s nearing a miracle I still have the energy to write about it after.

THIS is why I need an advocate, a support worker, a someone who can do the chasing-up and checking-in. It’s not me trying to shirk responsibility for my own endeavours, but trying to ensure that I don’t fall between the cracks again. Because I have, due to the aforementioned assortment of brain kittens and body woes. When I do speak to people about it, their assumption is often that I’m trying to weasel out of doing my own work; I’m educated, well spoken, on paper I should have my shit together. In reality, I’m holding the cracks together with jam. However, I have a vague plan: tomorrow I see the GP to do the form and at the same time I will ask if she can refer me to somewhere. If I have no luck there, I see my therapist on Thursday. If no luck again, the CAB (so, somewhere around 2019 when I’ve built myself up to it….)

I’d just really love for every step in this torturous process not to come with its own obstacles. NOTHING about the housing process so far has been anything less than frustrating. At this point, “frustrating” would be a vast improvement.

Reasons To Be Fearful I – People

07 Tuesday Nov 2017

Posted by in Blog, Mental Health

≈ 2 Comments

Tags

, , ,

Some disability-related writing I was asked to do is going to be published in a national newspaper soon. I’m excited, proud, all of the correct emotions, but I’m also a bit scared. Scared because putting my head above the parapet can draw more attention than I wanted, and the wrong sort.

In 2015 something bad happened. Every socially anxious person’s worst nightmare, and I lived it, for months. Friends unfriending, blocking, ghosting, and worse – being talked about, lied about, with no way to see what was being said. Strands would reach me from time to time, each time more exaggerated or fictional than the last. At my darkest points, I pictured it like a virus infecting every aspect of my social life, every group I was affiliated with (after all, everyone is connected these days). I wrote blog posts in my head daily, of what I could say to try and control the narrative, but always resigned myself with the fact that trying to do so would make things worse. Which is why I’m not doing so now, in fact. I’m still too anxious. But this is where being in the public eye comes in. I started to notice a pattern back in 2015, small but defined. When a blog post was shared around, or lots of people retweeted one of my tweets, I would have a drop in followers. It seems exposure led to a backlash, as some people made it their civic duty to tell others to unfollow me because of what they’d heard . It was hard to swallow, but I would eventually, after months of self loathing, tell myself that people who believed rumours about me weren’t worth having as friends or acquaintances. Sometimes I even believed myself. Even though it’s boiled over, now I’m getting more exposure for activism and writing it’s making me anxious in case it starts up again. The fourth? fifth? whatever wave of it I’m up to now. In a way I feel I’m more able to cope. My friendship groups have comfortable, equitable dynamics, and I’m not going through social destruction at the same time as trying to fight for the benefits I need to survive (2015 was not a good year).  But, all the same, despite being a stronger, more self-assured person these days (at least to an extent), I hope fervently that actually getting a readership won’t lose me friends. I hope the friends I have now know me well enough to know my principles. 

(An alternative take is I Survived Every Socially Anxious Person’s Worst Nightmare and that in itself is amazing, but I won’t lie and say it doesn’t still affect me. I can’t talk about it without crying. I avoid certain venues and events in case of seeing specific people. I can’t make a new friend without trying to work out how if they’re socially connected to anyone involved, and if they could already have heard of me in a negative way. And I am incredibly, incredibly scared of having an argument with any friend, or being read the wrong way. I screen cap conversations that I worry could come back to haunt me, for fear of being gaslighted again. But mostly I’m just thankful that I didn’t give up entirely, or failed in my attempt to, because it did get better. After nearly a year it died down, and I sat in the ashes of my self esteem and rebuilt from the ground-up.)

We’re (not) working on it. The council website lies on their behalf.

04 Tuesday Jul 2017

Posted by in Blog, Housing

≈ 1 Comment

Tags

, , ,

notworking

“We’re ignoring it.”

It’s nearly seven months since I began the process of applying for housing through my local council and the progress is laughable. Every few days since the start of March I’ve logged into my council account online to check what’s going on with the multiple documents I was made to upload. “We’re working on it”, says the automatic reply. (Remember, I’m applying because I am being evicted and need wheelchair accessible accommodation.)
I tried calling, no I couldn’t talk to anyone because I haven’t been approved yet therefore I don’t have a case worker to talk to. Kafkaesque.
My mental health team’s social worker refused to call on my behalf “because they never pick up”, so that was the end of that route of advocacy.
My friend, however, did manage to get through. I’m in a better position than most “vulnerable people” applying for housing through this ridiculous system, in that I have a number of friends working in relevant sectors – charities, housing groups etc.- and one of those friends got so frustrated on my behalf that they called the council, explained what their job was, and was forceful enough that the council called me back the same day. I should be hearing from a case worker sometime in the next fortnight, though obviously I’m not holding my breath.

It turns out my application has been sitting in some virtual in-tray in a virtual office that no one occupied and had been since January. “We’re working on it” was some placating notice generated automatically as soon as uploads had been received, whether anyone was actually “working on it” or not. [This was further proven when I tried to apply for a taxicard at the start of this month. I got an email receipt saying they aimed to have it done within two working days; it’s been over two weeks now and, yes, they’re still “working on it”. The good news is I can actually call the concessionary travel department on  my own behalf and talk to a human.] I’m starting to believe that council employees aren’t taught how to work the new online system, because that would mean they have to at least try to help as many people as apply for services.

So what now? Now I wait for the phone call from the case worker and try my best not to slip into serious depression over this ridiculous housing situation again. It’s coming in waves, but I’m almost getting used to it.

 

My wheelchair is not a prison!

12 Sunday Mar 2017

Posted by in Blog, Disability

≈ 6 Comments

Tags

, , , , , ,

Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”), but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone – look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair…. but they don’t think of the alternative. Before I had my electric wheelchair, I would leave the house once or twice a week, as it caused me that much pain to walk and the knock on effects weren’t worth it. Now, as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple days in a row with only minor consequences.  Without their wheelchairs, tens of thousands of people in this country would have no access to education, work, or a life outside of their homes.
The futon is my prison, and the wheelchair is my freedom and my best friend.
I will admit to getting a bit (extra) depressed from time to time because I miss being able to do the things I used to love – dancing, climbing, scrambling, hiking (basically anything involving going up mountains), kayaking – but what people often fail to understand is that even if I didn’t need my wheelchair, or the crutches I sometimes use, I wouldn’t be able to do these things anymore anyway. The wheelchair is not the symptom of my condition or my limitations, it is the thing that helps me continue to do what I have left. So don’t aim your sympathy at my wheelchair -maybe channel it into anger at the lack of wheelchair access I and other disabled people face instead!

Six Wasted Weeks

01 Wednesday Mar 2017

Posted by in Blog, Housing, Mental Health

≈ Leave a comment

Tags

, , , ,

(CONTENT WARNING: suicidality mentioned, eating disorders, mental health, unreliable therapists, sleepless rambling)

One day I want to write a post about the housing saga and have it be a POSITIVE one. I really do. Today is not that day.
It’s been 6 weeks since the hospital’s crisis team discharged me back to my regular department. During that handover meeting, my key worker (who I was meeting for the first time) promised me she’d set up a meeting for me and the team’s social worker with the aims of helping me navigate the council’s housing system without such a catastrophic effect on my mental health. The kind that saw a return of bulimic behaviours I haven’t had in 10 years. The kind that had me shaking and sleepless and suicidal in my GP’s office on a Saturday morning three days beforehand, with no idea where else to go to try and get help, desperate to stop myself from doing anything reckless. (Actively trying to prevent the loudest 20% of your mind from taking over the anxious insecure majority is a strange feeling.)
I went home feeling like the cork was just about jammed back into the bottle, aware that it would be very dangerous to let the pressure build back up again.

So, since then I’ve waited. For six weeks. In the meantime having no luck with my other housing options (see previous post). Mental health up and down, nothing as bad as it was when the crisis team had to get involved, because of the aforementioned cork keeping my distress gently bubbling away on the inside. Literally holding out for the help I was promised.

Today I left a voicemail with my key worker, chasing this up. Two hours later the social worker called. “K has just told me about your situation….”
I had to ask her if she meant “…for the very first time”. Yep –  Just. Told. Her. 
If I hadn’t called, how long could I have been waiting for this meeting? I have a horrid feeling the answer would have been indefinitely.
If I wasn’t so tired I’d be absolutely furious. I AM absolutely furious, but the tiredness means it’s coming out as defeatist sighs and the frantic need to write this all down before I fall asleep at the laptop.
I’m pretty sad too, though. I don’t find it easy to trust people, psych professionals even less than most, and I’ve already lost a huge amount of trust in my new key worker. I know that mental health services are getting cuts all over the place, everyone’s so busy and overworked, and she probably genuinely forgot. The problem is there’s a human impact on the other side of the safety glass. My life can’t be put on hold right now – I’ve wasted 6 weeks waiting, and my provisional deadline to move is now a month away.

The social worker said she would text me some potential meeting dates. I’m not letting myself hold out much hope of that without another prompting phone call. I’m also very glad that anxiety over being forgotten about is overriding anxiety about making phone calls right now.

(Lack of) Housing progress.

20 Monday Feb 2017

Posted by in Disability, Housing, Mental Health

≈ 1 Comment

Tags

, , , ,

Just over two weeks ago I posted a tweet asking for help finding accessible rental accommodation in London. It was retweeted over 240 times, and garnered no replies.
This isn’t a damning verdict of community spirit – it’s a damning indictment of the lack of actually accessible properties on the rental market, and subsequently why, 6 weeks after beginning my housing search due to impending eviction, I have made exactly zero progress.

In terms of looking for private market property, I have used every website I can find. First off, I tried the site which has ostensibly taken over for the Accessible Housing Register, which currently lists a grand total of ZERO accessible properties available to rent inn the UK. So, onto the non-specialist sites. Disappointingly, NONE of them have any filters for accessibility – even dssmove.co.uk, which lists only properties which accept housing benefit – which means I have to search for listings mentioning “wheelchair” and see what comes up (usually not much). (Searching  for “accessible” will bring up red herrings as it is often used in context of local transport.)  Another method is to look for buildings with lifts, or ground floor flats only, but again there is no guarantee that this means they are wheelchair accessible. I have sent a multitude of messages to property agents about places on the market – checking either DSS allowance for those which are accessible, or wheelchair access for those which do accept DSS, or both – and the few replies I have had so far have been negative. I have, however, been signed up to numerous unsolicited mailing lists.

On the non-private rental side of things, progress has stalled. The meeting with my key worker at the Personality Disorder service, in which she promised to put me in touch with the department’s social worker to help me navigate the council, was over a month ago and since then I’ve heard nothing either by phone or post. I went to the middle-of-nowhere hell that is Enfield Council’s housing department and gave them my doctor’s note, so hopefully they won’t discard my application in the meantime. My other option is a specialist Housing Association. The only one I’ve contacted and heard back from is Habinteg- I was accepted onto their waiting list last year, when my housing situation was simply “undesirable” and not “6 weeks away from eviction deadline”. It took me a while to build up the nerve to contact them, by phone, and I was told to email them instead. That took me over a week, the anxiety of response made worse by the disinterested person on the other end of the phone. Then I got this back:

habintegreply

[Good Morning,
Thank you for your email.
As stated in our Lettings Policy, we are unable to state accurately when we shall be able to help you, but I do assure you that your application will be given full consideration when suitable vacancies occur in the future.
Any information provided to support your application will help us to determine your priority of need in terms of housing, as we allocate properties on the basis of priority of  need, applicants do not move up the list,  and we are not able to guarantee to be able to offer properties to all applicants that have been added to our listings.
Regards,]

No contact name given, not even a mention of my name. I am pretty sure I was given a template response. I’m not even sure anyone read my original email stating I was facing an eviction deadline. After another few days of fretting, I’ve sent a copy of the eviction notice but I don’t expect more than another pithy email possibly telling me that it was insufficient evidence. I’m trying not to get utterly depressed at the probable loss of what was, at the start of this anxious period of my anxious life, my best hope at being suitably housed.

Update 21/02 – I have received an email from Habinteg informing me that my emails and evidence have now been forwarded to a Housing Officer. Whether or not this is so they can tell me the same thing, I’m not sure.

As the days count down to the provisional deadline of March 31st, my mental health is piping up again. Last night I had the first seizure I’ve suffered this year, and the first in at least a few months. I’ve begun dreading the evenings and nights again, in case of the Sudden Desperate Sads which lead easily to desperation, dissociation, or worse. I’m waking up anxious, staying anxious, until it turns to depression as the day wears on. I know this is when I should be calling the PD service key worker, but the lack of contact I’ve had from them since the Crisis Week means I’m incredibly anxious about doing so.

Game Face

31 Saturday Dec 2016

Posted by in Blog, Disability, Family, Housing

≈ 2 Comments

Tags

, , , ,

“I don’t think I can have you stay in my flat any longer. I want you gone within three months.” And with that announcement, delivered three days after Christmas, my father broke into a smile.
“There. Now I have that off my chest we can get on with enjoying the holiday.”

And remarkably, he has. Ever since dropping that bombshell on me over breakfast on the 28th, he has been eerily pleasant as if the idea had been pressing on his mind and now he had said it out loud it was no longer there. It’s crushing me, instead.

I wish I could say I was new to being thrown out by my parents. The fact is I ended up at my dad’s when my mum threw me out in early 2014. Before that we have to go back to 2003, age 17, when I wasn’t thrown out but more “had to leave” my dad’s flat for legal reasons – two years after my mum sent me to live with him when dealing with a suicidal teenager became too much of a hassle for her. After a period of homelessness and hospitalisation, I got my own flat in 2004, and stayed a tenant of a supported housing agency until I gave it up (and all the disability benefits too) to go to university. Although I knew my mental health was precarious, I had no idea at that point that I also had a genetic disorder affecting my connective tissue, and that within 8 years I would be a wheelchair user, unable to work, and back living at my dad’s because I couldn’t get an income.

 I have no idea how long he’s wanted to throw me out for. Periodically he’s complained that I’m not making an effort to find accommodation, to which I point out that I’m still waiting to hear back from the council – that private accessible accommodation that accepts housing benefit is hard to find is a gross understatement. Truthfully, my plan was to wait until I heard back from my last PIP assessment – firstly so I knew if I would be able to afford the move, and secondly (and more importantly) so I would not have to deal with two major stressors at once. Dealing with one thing at a time is how I manage my mental health. If I try to take on too much at once, it can go very badly. But he’s forced my hand here. I have to find somewhere to live before the end of March, even if I have to take my PIP claim to appeal again.

He’s always been very territorial about his flat. Despite my living there as a teen, it was always HIS. He resented that it was to his flat that my boxes would come back to when moving to uni, moving abroad, moving back in. He resents more when I get too comfortable. And heaven forbid I let my mother in….. part of me feels that my offhand comment on Boxing Day about mum “popping round” in the new year may have been the straw that broke the camel’s back. He’s expressed discomfort with my familiarity with the flat before. The few non-fixed adaptations and equipment prescribed by the council’s occupational therapist have mostly been consigned to the conservatory. He doesn’t want a cleaner in HIS flat (despite never being there to clean it himself). The powerchair in the hall is tolerated, although the wheelchair ramp, which I negotiated long and hard for, is considered a symbol of my “settling in”. Ironic, since it’s the thing which enables me to LEAVE the flat most of the time. Essentially, I’ve always known my residence would be temporary. I’ve been reminded constantly.

So, having had two days to take it in, I’m feeling relatively calm. Enforced calmness was necessary to avoid a stress induced breakdown 4 hours from home where all my information is, in a house where the internet is unreliable at best and any supportive family had left the day before. I had my necessary cry, and my small rage, and then I put on my grown up face and asked him to please give me a letter for the council stating intention of eviction by the end of next week. With luck, common sense will overrule spite and he won’t say I have made myself “voluntarily homeless” as he’s been threatening to. I’m not sure it would stand anyway, since I’m not a tenant and there was no contract for me to break the terms of.

In the coming weeks/months I will be blogging about my search to find a new home, and probably also drawing parallels with my experiences at 17 which so far I haven’t had the guts to because of associated PTSD. This is going to bring those memories bubbling to the surface though, so writing them out will be one way to take control. 

So. Let’s find an accessible place in London that also accepts housing benefit. Game face: on.

PIP – my recurring nightmare

17 Monday Oct 2016

Posted by in Blog, Disability, DWP, Mental Health

≈ 2 Comments

Tags

, , ,

Sunday night, late September

Well, it was a blissful four months without any DWP contact at all. A glorious summer devoid of this specific anxiety, along with the harsh, tinny compressed tones of the Four Seasons that inevitably accompany it (due to Vivaldi-specific PTSD, I will never listen to that piece for pleasure again). It was also a summer of drastically worsening illness, in terms of fatigue and autonomic dysfunction, but also, paradoxically, much improved mobility as my powerchair arrived in June.

Now summer is over. The brown envelope arrived the day after our return from our late holiday in Vienna. The timing couldn’t have been more symbolic.
Your PIP runs out on December 17th. Please reapply.
I knew I would be facing reassessment this year, even though I only received my first payment in January. I knew I’d only get a year. But I didn’t realise that I would have to fully reapply, not renew. This has sent me into something of a mental spiral, remembering all the stress, anxiety, extra dissociative episodes which occurred while trying to complete the original form – and realising that I will probably have to do this all over again – perhaps only to be told that I don’t qualify after all and that I will have to go through another appeals process.

It’s past 5 in the morning. I’m too anxious to sleep even though tomorrow is only the phonecall to clear up the renewal/reapplication confusion. My brain kittens figure it never hurts to panic early.

Monday evening, mid-October

The forms have arrived. It took me over a week to summon the courage to call the number and wait on hold through 40 minutes of pain and intrusive noise last month. I asked about reapplication vs renewal, and got told that whatever was on the letter I was sent, that’s what to do. So starting again it is. The deadline is November 7th, so I doubt I will be assessed in what remains of 2016 (last time I waited 7 months from sending the application to the initial assessment).
This means that I will lose almost £62 a week from December when my PIP runs out, until it  is (potentially) reinstated, as the Severe Disability Premium added onto my ESA is reliant on my getting PIP. It’s almost like they expect me to fail.

We’re doing the forms tomorrow evening, using the ones from 2014 as reference. I know that a worsened condition (both physical and mental) gives me no guarantee that I’ll get the points to reflect this. Cynically, I think it would be a miracle if I even matched last year’s results (Enhanced rate care; nothing for mobility). I had to go to a tribunal to get that. I’m not sure I can deal with another year of my life essentially put on hold so I can ensure I have the support I need. It’s a bloody grotesque system.

Left Hanging – a letter of complaint

21 Saturday May 2016

Posted by in Blog, Mental Health

≈ 6 Comments

Tags

, , , ,

I have had the same few items languishing on my to-do list for 2 months. I just scored one of them off by emailing in a complaint to the CMHT exec. In a way, I think it might have been easier had it been a phone call. Anyway, I finally did it.

In March I called the home crisis team number I’d been given for emergencies. It didn’t go well….

To  whom it may concern,

I would like to make a complaint regarding the mental health trust.
I had an assessment with [specialist] in early December 2015 about the best options for therapy, how to go forward etc. At the end of our appointment he gave me some resources for self-help while waiting for therapy to begin, including a card for the CRHT (Crisis Resolution and Home Treatment Team) to use in emergencies, with the [local area] number circled on the back. The front of the card clearly states “The team will see you 24/7 in the community”.

Late on Saturday March 12th, I had a dissociative episode, and worrying that it would get worse and I would hurt myself, I called the circled number. Due to my anxiety,and especially compounded when dissociating, I am not great on the phone. The person who answered it (I can’t remember if they gave a name, but they were female) kept mishearing me or misunderstanding me, which made my dissociation worse (at one point she seemed to think I had children, and asked if they were safe). After a frustrating attempt to describe dissociative symptoms while dissociating, during which I was accused of not cooperating because I said I wasn’t feeling anything, I asked to see someone from the crisis team. It was then I learnt, for the first time, that in order to actually see one of the team, a “service user” must be pre-referred for community support, so all I could have was the phone call, which was making me feel worse. (In the end I hung up because I was scared it would push me past being able to recover that night.)

My complaint is that at no time before I needed to use the Home Treatment Team was I told that I needed to be pre-referred before I would qualify for home visits. Since a “service user” is unlikely to call a crisis number unless they are actually in acute crisis, this seems like a very risky policy. In my case, it made my acute mental health crisis worse to find that out after being further agitated by invasive questioning and allegations during the phone call.

I would appreciate it if you could reply to this message, as it is not an easy thing for me to make contact.
Yours faithfully,
Nina [Childish]
I feel rather silly complaining two months after the event, but also feel much better for having sent it. The kicker is, I have another really quite serious complaint to make about the same CMHT which I’m going to address in person at the start of next month. Two complaints already and therapy doesn’t even start until June…
[edit – sorry, no idea what’s happened with the formatting]

DWP: Disabled Woman, Persecuted.

12 Thursday May 2016

Posted by in Blog, Disability, DWP, Uncategorized

≈ 4 Comments

Tags

, , , , ,

I had two weeks of breathing easily, knowing I had all I was entitled to.
Two weeks of planning for the future, and not fretting for it instead.
Two weeks of optimism. Two weeks of happiness.
That’s all I got.

It took me 16 months after applying to get my ESA and PIP approved, the latter through a gruelling appeals process. It took another 5 months to convince the DWP that I was eligible for Severe Disability Premium so I could afford to pay for my own care. That fight took more energy than I thought I could ever muster; it could have mentally broken anyone, even if, like me, they didn’t already have serious mental health problems.

Then on Monday I got a letter. The brown envelope.
My rate of ESA is changing in December. Dropping drastically.
A phone call cleared it up:
I am being reassessed for PIP before December 17th, which Severe Disability Premium relies upon me receiving. So they will be taking it away pre-emptively, because they’re so confident they won’t need to reinstate it when I fail to cling onto the desperately needed PIP points. (It’s not even worth noting that my illness is incurable and progressive, is it?)

And just like that, my brief respite is over. My week has been punctuated with crying fits, temper, feelings of hopelessness. I am so scared that the remaining seven months of this year will go much the same as those sixteen limbo months, full of dread, apprehension, self-loathing and despair. I would have dearly loved a longer period of time without this hanging over me.

One week ago I was starting to prepare for the accessible-home-hunt, as things in my family home (which I was only ever supposed to be in very temporarily) are deteriorating. Now I can’t do it- not if there’s a chance I’ll lose PIP, and the Severe Disablement Premium with it. If that happens I’d have to move out again and back to here and that would take more energy and self-esteem than I could ever afford to give.